This blog is totally independent, unpaid and has only three major objectives.
The first is to inform readers of news and happenings in the e-Health domain, both here in Australia and world-wide.
The second is to provide commentary on e-Health in Australia and to foster improvement where I can.
The third is to encourage discussion of the matters raised in the blog so hopefully readers can get a balanced view of what is really happening and what successes are being achieved.

Sunday, November 17, 2013

PCEHR Enquiry Submission November 2013 Final Version

This is the final version of the submission which I will submit tomorrow. Many thanks to all who have commented and provided e-mail etc. It has been a great help.

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PCEHR Enquiry Submission November 2013 Final Version

Submission From Dr David G More To PCEHR Review - November 2013

Summary Recommended Way Forward.

1. Major overhaul of leadership and governance of the e-health program to improve strategy, direction setting, standards setting, stakeholder engagement and consultation and transparency.

2. Investment in Clinical Systems (GP, Specialist, Diagnostic, Allied, Aged Care and Hospital) to be strengthened with continued support of standardised Clinical Messaging and Clinical Information Exchange between care providers. Emphasis on private sector provision where appropriate

3. Continued support of national e-Health Infrastructure (IHI, Terminology, SMD etc.) under the governance cited in Point 1.

6. Progressive rapid phase out of the current PCEHR as points 2 to 5 are realised. This should happen as quickly as possible given the patient safety risks associated with data quality, incompleteness etc.

Submission

Note this is a condensed high-level summary document. I do not believe anything contained here is not supported by detailed evidence which can be found on my blog.

Background To and Core Issues Regarding the PCEHR Program.

The idea for the Personally Controlled Electronic Health Record emerged from the NHHRC, as an afterthought, and appeared, without any significant consultation, in the May 2010 Budget as a $467M 2 year project that was to go live on July 1, 2012. Further funding was to be contingent on the system delivering benefits - but nevertheless more funding has provided to the present day.

There was no cost / benefit studies undertaken on the plans and it was assumed the benefits case for a quite different NEHTA IEHR proposal was assumed to be correct - despite the fact that many of the drivers of the benefits were not present in the PCEHR (e.g. Clinical Decision Support). A public consultation on the original PCEHR Proposal resulted in virtually no change to the plans despite a lot of sensible concerns being expressed.

The PCEHR went live, with some issues that appeared to be related to absurdly tight delivery guidelines applied by the then Minister, in July 2012 and since then it has been gradually enhanced and considerable work has been done to integrate access to the PCEHR from the major General Practice Management Systems. This explains why some 16 months later the system is still not delivered and fully functional. Politics has also led to ‘function creep’ with announcements of additional functionality before the system was stabilised.

Nowhere in Western World has a major Health IT project of this scale, with the planned mode of operation been either delivered successfully in such a time-frame or shown to offer benefit. The design has been based on intuition rather than evidence and on the basis of clinician and patient reaction this seems not to have been correct. (The evidence for this lies in the fact that despite over 1 million people having registered for a record only 30,000 or so have actually added some of their information to the record - so the public is not using it).

The Three Major Issues

Ignoring all the usability, medico-legal, workflow, workload, data ownership, data control, security, privacy, patient safety and clinical relevance issues (which are all very, very important) to me there are three major problems. The first is that the PCEHR can’t be a system that properly and fully serves the needs of professional clinicians and patients simultaneously. They have dramatically different needs and just who the PCEHR is for and what it is actually meant to do for them is crucial. If it is for patients the system lacks and really can’t deliver the functions international experience shows are valued (appointment making, repeat prescriptions, direct e-mail to their GP and access to approved laboratory results (not yet available but maybe possible). If it is for clinicians it is too slow, lacks decision support, external communications and the list goes on.

The second issue is, bluntly, that the concept of patient control just alienates clinicians as a place to source information that can be trusted. Clinician trust is vital and the issue of being able to trust information crucial, as if information is either inaccurate of incomplete then there is a real risk of patient harm. From a practical clinical perspective it is much more sensible and much safer to start a patient’s assessment and treatment from the ‘ground up’ than try to sort out what can believed and what can’t be. There are real medico-legal implications in all this.

The third issue - which relates to the second is data quality. Obviously trust and data quality are inextricably linked. We have seen many errors in the data uploaded to the PCEHR already from Medicare Australia data sources - which includes some in my PCEHR record. Data quality in health information is presently not ideal in many health systems and needs to be improved before much use is made of the information for management and research.

Throughout the conceptual development, actual development and roll out, the drivers of progress have been NEHTA and the then DoHA who have been actively hostile to many private sector initiatives, have actively corrupted and distorted the e-Health Standards setting processes, and have really failed to even seriously consider the patient safety issues around the PCEHR and other initiatives with only the most limited information being made available and that really not addressing the core issues.

Over the last two to three years the leadership and governance of the PCEHR Program and other initiatives has been secretive, non-transparent arrogant and un-consultative.

The outcome of all this is that we have a system which was not recommended by the 2008 National E-Health Strategy, which does not serve anyone’s needs well, which is said to have now cost near to a billion dollars, which is strongly suspected to be intended to be an administrative and not clinically focussed system which have so far delivered virtually no benefits to patients or their doctors.

What Is To Be/ Should Be Done From Here?

To put it simply, for me, what is needed is that the policy makers decide (in consultation with relevant stakeholders) what it is they want in a national system and just who that system is to be deigned to serve.

It goes without saying that what follows assumes dramatically improved leadership, governance and transparency which has been evidenced to date by NEHTA and DoHA in the e-Health domain.

If asked, my preferred approach to e-Health going forward, would have two broad components.

The first would be based on enhanced connectivity and functionality for current practice management systems used by GPs, Specialists, Allied Health and Hospitals. The objective would be to maximise, standardise and optimise the information flows between all actors in the health system and thereby improve the patient experience as well as the quality and safety of care. Much of this could be achieved working with the private sector. As part of this effort there needs to be a major focus on data quality and interoperability.

Part of the enhancements would be to design (as is happening in the UK and the US) ways that patients could interact electronically with their clinicians to see the benefits cited above.

The second would be to develop regional geographic shared record hubs which would hold a carefully considered small subset of health information to assist Hospitals and other clinicians offer care (with the patient’s consent) based on information held on the shared records in emergent and travel situations. These hubs I envisage as being developed, trialled and refined over time with an active network to learn what was working, what was not and how the good ideas that are working can be spread.

As far as current activities are concerned I would see the continuation of the core e-Health infrastructure (SMD, IHI Service, Terminology Support etc.) and would consider continuing support of the PCEHR until such time as regional shared record hubs can be put in place. Longer term I believe the overall architecture of the PCEHR is so flawed that it should be retired.

I would also fundamentally restructure NEHTA and the e-Heath parts of DoH to improve transparency, stakeholder engagement etc. I believe all this is consistent to the 2008 E-Health Strategy and likely to be consistent with the planned 2013 refresh.

Similarly I would be very keen to ensure all further investments be subjected to rigorous assessment of clinical impact and value for money. Obviously a formal audit of the overall e-Health program to date is also required.

There is a lot of detail that can be filled in to flesh out these ideas but overall it seems to me an approach of this type can achieve the dual objectives of quality professional / clinician support and communication with patient interaction to the extent they desire. Taking this route would also re-engage Government with the private sector and allow the Government to focus on the things it needs to do while having the private sector do what it does best and would be consistent with the National E-Health Strategy

Please Note: I am more than happy to discuss these ideas with the review panel if desired.

Just A Little Note On The Benefits Claimed By The Pollies For E-Health. They Don’t Know What They Don’t Know.

Addendum - Early Initial Responses To The Specific Questions Asked.

Review of specific Terms of Reference:

The gaps between the expectations of users and what has been delivered

International experience has made it pretty clear that what consumers want from systems like this are things like access to e-mail the doctor, ability to request repeat prescriptions and appointments and access results. Most of this the PCEHR cannot do and at present it does none. Ease of use is also important - not good on this front as well - as well as slow.

For clinicians the needs are for usability, no workflow issues, integrity and no medico-legal issues or liability as well as sufficient useful information to make access worthwhile.

The level of consultation with end users during the development phase

Essentially there was none until very late and this did not actually create a useable system at the time of launch

The level of use of the PCEHR by health care professions in clinical settings

The PCEHR is not designed to be used in the clinical setting - the present practice management systems are. It is an add-on that seems to add delay and extra work for not much benefit at this point. It is thus not all that much used

Barriers to increasing usage in clinical settings

I can’t see that the PCEHR will ever replace the prime clinical systems and will only be used in those settings when it adds value to a consultation for the clinician or the patient. This will require removing all the medico-legal, privacy, security and usability concerns and then to have a network effect expand the usage base in that order. To me this will need a major re-design based on real consultation. It also won’t happen overnight and probably cost a fair bit. A business case is needed on the proposed new system. Alternatively a new regional approach might be adopted

Key clinician and patient usability issues

See the discussions above - especially 1 and 4.

Work that is still required including new functions that improve the value proposition for clinicians and patients

As above.

Drivers and incentives to increase usage for both industry and health care professionals

The key for clinicians is to ensure that using the national system is cost and workflow neutral while not exposing them to risk.

For industry there needs to be much improved governance and leadership which is not anti-private sector as NEHTA and DoH are presently felt to be - despite their rhetoric.

The applicability and potential integration of comparable private sector products

This depends on what the final - as opposed to the present design of the PCEHR is.

The future role of the private sector in providing solutions

There are already private sector solutions (e.g. Extensia and CDM-Net) and these need to be looked at - with others to see what is possible

The policy settings required to generate private sector solutions

The main issue here is to stop NEHTA and DoH engaging in behaviours that are costing the private sector money while not providing reasonable conditions for private sector solutions to develop and flourish.

It is also important to remember General Practice is made up of many small businesses who are very cost sensitive and need reasonable compensation for the time spent doing any e-Health activities that are not clearly useful to them, the medical software industry or the patient.

----- End responses.

Overall I am reminded of the following quote which seems to say it all.

“If a man does not know what port he is steering for then no wind will be favourable.”

Seneca (4BC - 65AD).

Addendum - Poll on Continuation Of PCEHR.

AusHealthIT Poll Number 192 – Results – 17th November, 2013.

The question was:

Do You Believe There Is Any Realistic Possibility Of Sufficiently Fixing The PCEHR To Make It A Clinical Success And Be Widely Used By Doctors?

8 comments:

David, I find your statement “The second would be to develop regional geographic shared record hubs which would hold a carefully considered small subset of health information to assist Hospitals and other clinicians offer care (with the patient’s consent) based on information held on the shared records in emergent and travel situations. These hubs I envisage as being developed, trialled and refined over time with an active network to learn what was working, what was not and how the good ideas that are working can be spread”, very appealing and it fits well with the established lessons from the knowledge gained from implementing complex e-health systems around the world. The core functionalities of these successful systems are; Collaboration, scalability, sustainability, flexibility, rapid form design, the use of standards, support interoperability supporting high quality research. The systems must also be web-based and support intermittent connectivity. They should be of low cost (preferably free and open source) and critically, be clinically useful. If not clinically useful (a point you address in your summary) the system will not be used. Also free does not mean the exclusion of commercial vendors. [Reference: Mamlin BW, Biondich PG, Wolfe BA, Fraser H, Jazayeri D, Allen C, et al. Cooking up an open source EMR for developing countries: OpenMRS - a recipe for successful collaboration. AMIA Annu Symp Proc. 2006:529-33. Epub 2007/01/24.]In relation to your statement regarding stakeholder involvement I personally have serious doubts about this government involving those who may be able to provide appropriate guidance and advice. If they do not know what the problem is (clinical information management at the patient care interface as the core infrastructure) then bureacratic solutions (business models) will repeatedly be put forward as the solutions.From my perspective thanks for all your efforts in making the effort to try and induce a new policy on e-health in this nation. We need it.

One of my bugbears is the lack of interest in a national scheme for identity management (yes, it's a forlorn hope). So, here's another facet that feeds the obsession.The Victorian Law Reform Commission reported on Birth registration and birth certificates. Since a health record begins at birth, I wonder why this report has no mention of electronic linkages to the NEHR? As far as I can see, there are zero mentions of 'health record', even. What did I miss?

Hi david, whilst you have done a wonderful expose of the issues that have failed to be considered in the PCEHR rollout I find a gap in your argument for what needs to be done next. I understand your points for the future pathway to be:1. Expand connectivity to practitioners2. Develop geographic hubs to support emergent (emergency?) and travel situations.The gap I find is the resolution of your point that is no coherent determination of whether the PCEHR is for patients or practitioners. As you point out this needs to be resolved before any other progress can be made. Should the policy be determined that both have to be satisfied this only means that two different objectives need to be pursued requiring a different range of tasks despite some being overlapping. I'm not sure whether you are fence sitting on this dichotomy or truly are ambivalent about making a judgement as to which is the better.I think that the doctors trusting the record is a deal breaker and so the PCEHR will only be used clinically where it is trusted or nothing else is available and its contents can be used despite the risks. That points directly to needing the regional hub architecture. The Scottish experience is worthwhile here - they defined a clear clinical objective - get better support for emergency attendances so they focused on recruiting ED frequent flyer candidates (e.g. the aged) to enter their key information: medications and current diagnoses and they got material value from the process. The same strategy is applicable here.